Thursday, September 8, 2016

Celiac and Kissing Frogs

Jason and I were having a conversation about marriage today when I made the analogy that sometimes marriage is more about kissing frogs than the frog becoming a prince, and you better make sure that the person you are in the marriage with is the person you want to be kissing frogs with.

He was a little offended (rightfully so!) until I explained myself. HE wasn't the frog. Life was.

I imagine life sometimes like a hologram. When things are going fantastic, that hologram is the prince - life is great, it is everything you ever wanted, everything is sunshine and rainbows and nothing bad can ever happen, ever. When life hits you with things like autoimmune disorders, the hologram becomes a frog. The frog is the work - you keep kissing it, hoping it will turn into the prince and you can live happily ever after. Too often, that frog just sits there, as you kiss and kiss and kiss and wonder why it isn't turning into a prince no matter what you do and what work you put in.

I can't really say for sure when I developed celiac. I don't know if I have always had autoimmune responses to gluten, or if the other autoimmune issues I have decided to band together to create another disease. Autoimmune is funky like that - it's almost like a snowball effect; the more autoimmune issues you have, the more likely you are to develop another. It's like a fucked up version of Captain Planet (shout-out to the 90s). With your autoimmune disorders combined, I am.... a tired exhausted mess is what I was....

I also can't really say for sure at what point the full exhaustion and illness hit. It seemed like such a slow progression, starting with infertility, into hypothyroidism (which was actually Hashimotos), into PCOS and finally into a place where I had three bad weeks in a month and maybe one good, if I was lucky and didn't "overdo it" (and by overdo it, that often meant just walking to get the mail).

I was always exhausted. It's hard to describe the level of exhaustion to those who have never felt it, but it was genuine effort just to get up to take the dogs downstairs. Those were my good days, forget it if I caught a cold, or had the flu, or had a flare up.

I felt like I was in a never-ending battle of kissing the frog and hoping to get the prince. I started taking birth control, as I noticed onset of symptoms after I stopped. This helped for a time, but I quickly was back to the norm of feeling horrible. It was like I had kissed that frog, and the hologram fritzed, and I got a glimpse of the prince before being smacked in the face with the frog again.

Every time there was a little bit of progress in dealing with the known autoimmune disorders, I got a glimpse of the prince through the frog. It was frustrating, and made things even more exhausting than they already were, because I could visualize how my life could be better if I could just get these autoimmune disorders under control. Eventually, for lack of a better term, I gave up. The frog was always going to be there, so I better learn to be happy with the frog, rather than continue the exhausting chase of the prince. I stayed in that place for longer than I would like to admit. People tried to help - suggesting trying this, or experimenting with that. I shut them all out. They didn't get it - how can you get it until you've faced that level of illness? Even my endocrinologist was telling me that sometimes there's not more you can do, and this is the "normal" of autoimmune. I took my medicines, I took my supplements, I was doing everything "right" and still getting the frog. 

Testing for celiac felt like another frog situation. I was already exhausted enough with the three known disorders, and piling on another only to have the metaphorical prince never show seemed like too much. To be honest, I only did it to have everyone off my back; "this is just another thing I am doing that won't help, and I will still be stuck with the frog, and nothing ever helps, and I am so exhausted already so why continue putting energy I don't have into trying to find something that does?"

Obviously, being diagnosed with celiac hasn't taken away the frog. I still have four autoimmune disorders, and they will and do still flare. Autoimmune diseases don't go away, they are simply managed.  I am learning to enjoy the prince while it is there, and to deal with the frog when it pops up, and with a more optimistic attitude than I've been able to afford in years. 

With all that said, I really feel like the celiac diagnosis has created this glimmer of hope that I haven't felt in a long time. I am getting sick less often. I am able to go for a walk with my husband and not be out of commission for the next week. I am hoping that as I continue to be gluten free, I will gain even better health, an even better life. What I was doing before wasn't living, it was surviving, and barely that. I have finally "kissed a frog" in life, and gotten less of the fritzing prince. While the celiac diagnosis means I don't get to splurge and eat out worry free, it does mean that I get to see a lot more of that prince than I have seen in years. And that is worth all the gluten in the world. 

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